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Thu, Aug. 13th, 2009, 05:59 pm
kkleigha87: hi

Hi. I am happy that this community exists! My daughter has a bleeding disorder call von willebrand factor deficiany type 3. Type 3 is the most severe type. Basically, when she gets cut or scratched, she does not stop bleeding. She also bruises extremely easy and has a high high risk of internal bleeding after a small fall or injury. She is only 10 months old and she has not had to have an infusion thus far so hopefully I can keep her from getting injured. Although, it seems to be more of a challenge now that she is trying to walk : (  My son is 2 and he was tested to see if he also has it. He has von willebrand factor deficiany type 1, which isn't as serious, but still! Both of my children!? Has any body in this community ever had experience with this kind of bleeding disorder? If so, were there any support groups that you attended? I don't want my daughter to feel like the odd one out when she gets older and i would like to get involved with other parents who have kids with the same thing. Any help would be greatly appreciated! Thanks!  

Sat, Sep. 19th, 2009 05:47 am (UTC)
(Anonymous)

I don't know if you ever found out more info, but did you get their tests done at an HTC (hemophilia treatment center)? If so, they might be able to put you in touch with some local organizations.

Also, check out the message boards at projectredflag.org

Fri, Nov. 27th, 2009 04:24 am (UTC)
(Anonymous): hi

Look around your area for a good Hemophilia organization. Usually Hemophilia groups have other bleeding disorders such as von Willebrands under its umbrella. I myself have Hemophilia A (factor 8 deficiency) and belong to the New England hemophilia association and we have numerous people in the assoc. with von Willebrands. That would be my advice. If its an organization dealing with Hemophilia, it probably (id check it first) covers Hemophilia.

And I know people personally who did things with projectredflag (as the previous poster mentioned). Good luck.